My 18yr old son was diagnosed 3.5yrs ago with a 5cm AVM in his left occipital lobe after an MRI was ordered due to frequent migraines. After significant assessment and seeing multiple neurosurgeons on the west coast we selected to have him treated with GK given the surgical risks to his vision. Treatment was done in 2 stages with the first in May 2017 and the second in September of 2017. I know that I have interacted with a number of people on the AVM forum over the last 3yrs and so I have been very hesitant to provide an update on my sonās status.
On March 13th Bryan had a large rupture of his AVM and has been in a coma since then. He was doing great after his treatment and we had just completed the 3yr angiogram to find that although some of the AVM was still present, it was much smaller and likely now had surgical options to remove. While waiting to discuss those options, fate caught up to him and changed his and our lives forever. The AVM was removed 2 weeks ago and we are now in a waiting game to hopefully see him progress out of his coma. The bleed directly damaged his field of vision in both eyes and the compression on the brain from the bleed caused a few small strokes elsewhere in his brain. I have had 4 different neurosurgeons look at his mri and they are stunned there wasnāt more damage from the bleed. We are not sure where our journey will go from here but wanted to update everyone and ask for your prayers.
I donāt regret our decision to proceed with GK treatment vs craniotomy given the size and location of the AVM but I want people to make sure they are very careful after their GK treatments. Donāt let your guard down and make sure any symptoms get checked out early. One positive thing is that after getting over the shock of his initial diagnosis, Bryanās attitude and outlook on life changedā¦ā¦he lived every day to its fullest and worked hard at everything he didā¦appreciating everything and opportunity he had. That work ethic and outlook will be needed now more than ever.
my thoughts and prayers are with you and your son; I had a rupture that caused two right frontal strokes and took out some of my peripheral vision to my left and down, but my life didnāt end there; it was a struggle and itās something Iāll have to deal with the rest of my life but if heās a fighter he will get back from thisā¦slowly but steadily day by day step by step just have to keep fighting!
Iām so sorry for the news. Your son is in my wife and Iās prayers. I am a survivor 3 times over with bleeds in 2000, 2010. After a craniotomy and shunt revision, it is an uphill climb. You and your son will be in our thoughts and prayers. Blessings as you continue.
Iām so sorry that Bryan has had a bleed. I canāt imagine how you all feel, and at an already difficult time! Iām sending lots of love your way!
Your update is really helpful, though. Itās great to know that Bryan decided to grab life and make everything of it, though I note your recommendation to go easy post gamma knife. I also remember some of your posts about Bryan where you were reflecting on the difficulties being behind you and encouraging others in their journey. Youāre going through the toughest of times. All my love to you.
I donāt think you had a lot of choice about the routes to follow and if I remember right you even had an opinion from Dr Spetzler. So it is great to hear that youāre comfortable with the choices that you made. I always believe we should never regret the medical decisions we make. We make the best possible choices in the most impossible situations and nobody could tell us back then that doing anything different would play out better or worse.
Thank you for sharing a really difficult post. I wish you all the best and hope to hear more positive news soon!
Jeff,
Being around the age of your son (19) and having a similar diagnosis to an occipital AVM due to regular 'Mās at 15y/o, I can definitely understand what youāre going through because I see the concerns and worries in my motherās eyes for me everyday. Just being āquiteā lucky the AVM hasnāt ruptured āyetā (God forbid). I am firstly glad to hear that your sonās AVM has been removed. I also very much hope he comes out of coma soon, it really saddens me to hear. I couldnāt imagine going through that myself, so I can say youāre the mother of a very brave child. I hope that your trials are eased and soon he recovers so that he can CONTINUE to live his life to the fullest. These challenges will only carve him into a stronger, resilient individual and I hope that we are able to witness him grow into this very person through his recovery!
Many, many best wishes! and stay strong because this will be over soon!
Thank you all for all your positive thoughts. Although I have posted here a little butā¦I always wanted to help pass on everything we learned through our process and offer support. I never thought we would need the support! Thanks again.
You, your son and your family are in my Heart and in my Prayers. I pray God hears our collective good wishes for Bryan. My recipe for healing is P&P (Prayer & Patience). Trust me, it works!
I am deeply sorry to hear about your experience. I had GK treatment in 2015 after my right frontal lobe AVM was discovered by MRI due to migraine headaches. At each subsequent MRI we were assured it was responding well to the treatment and was āalmost goneā. Twenty-four months post treatment, the remaining AVM ruptured. I had a craniotomy at that time and spent four weeks inpatient. By most accounts, I have made a full recovery. I know the fear and doubt about making treatment choices. My neurosurgeon said that having the GK prior to the bleed most likely saved my life, and made the task of removing it much easier. My strong prayers for your son, and for you!
Iām so sorry to hear about your son and your familyās struggles. I had an emergency craniotomy 23 years ago that caused me to lose my left field. It is not any easy life for sure. The good news is I lead a relatively normal life and outside of my own utter frustration no one even would know about my sight!
God bless. My prayers are with you
I had an AVM in the same area as your son. Mine was diagnosed after it ruptured while I was 20 weeks pregnant. I was 24 at the time so several surgeons were very reluctant to operate bc of the Vision loss risk. I chose to have two embolization procedures followed by a craniotomy. I lost part of my vision (both eyes) after the first embolization procedure. I am now 44 years old. I have good days and bad, small seizures, headaches and the vision loss but I am alive and otherwise healthy. I also have two beautiful children. I read your update today (and I really needed to read it) and it reminds me how blessed I am. I will be praying for your son. The brain is a miraculous organ. He just needs time to rest and let his brain heal, and I know he will come out of this! Stay positive and reach out to people in this group. He is very lucky to have you. When I went through everything my mom had already passed away from cancer. You are his strength. Prayers to you all!
I am so sorry to read this. I am also the parent of an AVM patient whose AVM ruptured. That was our introduction. I noticed you said heās still in a coma. This is so frightening but donāt give up hope. It takes a very long time to heal from a large hemorrhage. Have they assigned a Glasgow coma scale or a Rancho scale # to your son? My daughter was at Glasgow 3 for about a month and at about a Glasgow 10 at 3 months. She did not make significant improvements (she seemed to have fully emerged from her less than conscious state) until about 5.5 months after the rupture.
Thinking of you and your son and praying he makes excellent progress.
I am in the situation where after I read stories I decided to do 3 embolizations and do everything possible to obliterate this thing. I know Iāll have to do GK afterwards. So itās devastating to see the AVM ruptured please keep us updated weāre paying for your son as I can only imagine how tough it is now. I have faith and expect to see your son recovering prayers
